Would This Help You After A Seizure? Please Tell Me Your Opinions. | MyEpilepsyTeam

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Would This Help You After A Seizure? Please Tell Me Your Opinions.
A MyEpilepsyTeam Member asked a question 💭

I already got some feedback on something similar to this, but I'm going to put it all out there now because I've done a TON of research on all of this.

Would it help you to have a watch (a good looking one, not crappy. Maybe even custom) or an app on your phone that you could program to fit your needs after a seizure?

I often have seizures alone and I'm working with a couple developers to bring this to fruition so having a seizure alone isn't so traumatic. I'm building a watch that has the… read more

posted September 12, 2023
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A MyEpilepsyTeam Member

Postictal is the worst. Luckily I’ve only experienced it alone twice and one of those times my dog helped me to regain consciousness by bumping me and licking my face.

@A MyEpilepsyTeam Member sorry that you’re not really getting the feedback you’re looking for, seems like some replies keep missing the point that you are talking about how to manage postictal phase. It might not be a popular idea, but think your idea has merit for those who have a need for it. Especially a calling emergency contact feature. Although I wouldn’t know to press a button, so if it could detect the tonic clonic and automatically start doing its thing after, it might work.
It always feel like I’m dreaming, in deep sleep, and the people around me keep talking to me and trying to wake me and keep me awake, because sometimes when I “dose off” again, I also stop breathing, which is scary and dangerous. So they keep asking me random questions until I start giving sensible answers. Then they know I’m oky.
Good luck on whatever you decide on about the project.

posted September 15, 2023
A MyEpilepsyTeam Member

I like the idea of a button to push to play a recording of someone's voice that is comforting. That seems helpful to me.

posted September 15, 2023
A MyEpilepsyTeam Member

I know the iPhone has an app for when you fall ( am pretty sure ). I know the watches are very pricey. But there is some help when you are alone.

posted September 15, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
Good morning
Your question is a complex answer.
There is an app at play store called Epsy that can help you.
This app to me has everything you need to help your day without an alarm to notify that you can be having a seizure.
If I am understanding correctly, you are alone without any help.

Google service dogs for epileptic patients
You will find a headline reading ADA assistance- therapy dogs for assistance.
You will find 6 other links that should answer some of your questions.

Type in Epilepsy foundation, this can is also be a start.
www.epilepsy.com/volunteer/spreading...

You ask about music.
I meditate late at night and listen to Christmas and or classical. From you tube.
AS far as classical I like Mozart's Christmas Masterpieces Festival Classical music and winter songs.

I also pray the rosary. To me when saying this prayer I don't feel alone...

We who use this page know how alone one can be.
When you seizure in front of strangers or people who know you and don't understand our disease and simply walk away. This will include family because they don't or won't take the time to learn what epilepsy is about.
Friends you once have quietly disappear. There are very few people out in this world will care enough to take the time to learn about this disease.
You will know right then and there if you have a friend. Keep them by your side if possible.
Show your purple.

Have a blessed day.

posted September 15, 2023
A MyEpilepsyTeam Member

I’m not developing the watch for that reason. There’s already a bunch of stuff out there for that. It will have those functions, though.

What I can’t find is something that helps me recover.

You’ll choose what you want it to do. I made a lot of progress today so this will evolve as we go, especially with other peoples input!

I opened a non profit 501c3 so I can do this without the burden of making a profit. I really want to try to make this app available for free.

posted September 13, 2023

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